Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Dear Janay, At least your sense of humor is rising to the challenge! LOL. Something better come to our rescue-right? ;-) in Ma. <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Reflux can cause the airway to become very swollen--Lord knows that has been Evan's problem on more than one occasion (the trach idea was being considered at one point, before his Nissen). Amazing how treating the reflux, and then treating the airway with a little steroid helped. As long as Rasha's sats are " OK, " I would wait on the albuterol so the pulmonologist can get a baseline too. (mom to Evan, 19 months) jkhayes95 wrote: Sorry I missed a lot of this conversation. We are actually in the hospital now trying to get " answers " . When she yanked her tube out yesterday morning and I called the GI to be a squeaky wheel, he said come in and we'll run some tests. Chest x-ray is showing pneumonia. I am not content with that being the end-all answer. She has more problems than that! ina, she takes the same amount as Vinny. Not quite 1000 cal per day. Whoever just suggested the DuoCal as a problem, I'm thinking that might not be a bad idea. Sorry I couldn't see who said what, I'm in the parent room and I have to get back. I don't believe in leaving her alone for too long and no one would hear her crying either. GI doesn't think the root is a GI problem. He's called the pulmonologist for a consult and we're waiting to hear. Someone ordered albuterol neb-not sure who so I told them to wait for pulm Doc so he can hear the REAL Rasha. Think we might be looking at a bronchoscopy which has never been done-even when they wanted to trach her for the laryngomalacia. I'll update soon and I'm sorry I couldn't read closer as I think I read CHrystine is in the hospital too? Janay > > > > > > I have a daughter with CHARGE who will be 4 this > > April. It seems > > that we have been dealing with vomitting all of her > > life. Different > > things have helped to make a bit of difference but I > > think a lot of > > it is due to her getting older. When she was > > younger, switching her > > from powdered formula to liquid (didn't matter what > > brand or type) > > made a world of difference. Before switching she > > would scream and > > cry the entire time (about 1-2 hours) and then vomit > > everything back > > up. I cannot even begin to describe the stress level > > in our house at > > that time. After some time and many different foods > > she ended up on > > Nutren Junior with Fiber. It has added fiber b\c we > > noticed that > > when she would get " backed up " she would gag more. > > Miralax didn't > > seem to work for her. For her, reflux medication did > > nothing to > > eliminate the gagging and wretching. Although the > > doctors said that > > it would still help with any burning from reflux. > > Now she did get a > > Nissen at 6 months but at some point it came undone. > > This past fall > > she had it fixed. Things are great now in the sense > > that when she > > gags she doesn't vomit she just might hawk up some > > spit and mucous. > > This has eliminated our stress load greatly b/c > > before she would > > lose so much weight with every episode. Now we can > > keep food in her > > which is wonderful and we can take her places even > > though she > > doesn't feel good b/c I know she won't vomit all > > over the place. We > > eventually started hooking her up to the pump at > > night so that we > > didn't have to feed her so much with each feeding. > > This was great > > b/c we could start getting more in her b/c she > > basically ate 24 > > hours a day without being hooked up to the pump > > during the day. Now > > after some point, maybe 1-2 years ago her vomiting > > started spacing > > out a bit and developed a sort of pattern to it i.e. > > she would have > > an episode every month or two. She would feel awful > > for 5-7 days > > sleeping all the time, cranky, sensitive to light, > > etc. We looked > > into Cyclic Vomitting Syndrome (CVS) and abdominal > > migraines and she > > finally got diagnosed last week with CVS. So we > > finally have a > > diagnosis which is so exciting b/c now we can work > > towards treating > > it. She too had the gurgling sounds. After having > > her Nissen fixed > > this past fall and about a month afterwards we think > > she did develop > > Dumping Syndrome. But by dropping her feeds during > > the day in > > quantity and uping the quantity at night it > > instantly went away and > > so now we are trying to inch them back up again. > > Sorry that this is > > so long but we have had years of dealing with this. > > So here is my > > summary.... > > > 1. Switch to liquid food vs powdered. > > > 2. Look into Nutren Junior with Fiber (b/c of the > > added fiber) to > > aid with constipation. > > > 3. Does the vomitting have a pattern to it (i.e. > > every so many > > days). Then look into abdominal migraines and > > cyclic vomitting > > syndrome (CVS) > > > 4. Does your child go to sleep almost instantly, > > have pain, sweat, > > etc. Then look into dumping syndrome. > > > 5. With all of the above, considered hooking your > > child up to a > > pump at night. It really made a world of difference > > for us b/c we > > didn't have to give her so much at each feeding. She > > actually had a > > growth spurt from doing this. > > > Again I apologize for the length. I just signed up > > to this > > listserve last night so this is very new to me. Hope > > this helps. If > > you have any more questions don't hesitate to ask. > > And again time > > makes a big difference as well. > > > > > > > > > > > > Re: Vomiting issues > > > > > > > > > Thanks everybody! I knew you guys would come > > through! I am at > > the > > > point now where I'm even scared to feed her. To > > give some > > background > > > info I may have left out-she is on Reglan and we > > just switched > > to > > > Prevacid from Zantac (and we got a suspension > > made of the > > Prevacid.) > > > She does have reflux but from the last few upper > > GI studies it > > is > > > minimal and what they saw went back down. > > Swallow study shows no > > > aspiration. Even when she vomits she pushes up > > to get her face > > away. > > > She ws vomiting prior to the switch of > > everything just not as > > often > > > and nowhere near as forcefully. The sounds > > coming from her gut > > are > > > like turning a 5 gallon water bottle onto the > > cooler. > > > > > > Believe it or not, I've never vented her tube > > and the GI has > > never > > > asked nor told me to. She is very mucousy but it > > only starts > > running > > > after the first feed of the day. She coughs and > > sneezes like an > > old > > > man all throughout the day. She is not on any > > heart meds. The > > > dumping is something I wondered about when I > > read that post > > about JD > > > a few weeks back. Rasha's complication to adding > > protein is that > > her > > > kidney function is declining and I'm afraid to > > increase her > > protein > > > although neprh doc still estimates function at > > 80%. > > > > > > Her OT suggested today the water 30 min prior. > > I'll try that > > with > > > === message truncated === > > > > > __________________________________________________________ ______________ > It's here! Your new message! > Get new email alerts with the free Yahoo! Toolbar. > http://tools.search.yahoo.com/toolbar/features/mail/ > --------------------------------- Any questions? Get answers on any topic at Yahoo! Answers. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Janay- Here's to quick answers and problems resolved. Hugs to you all- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Saw pulmonologist this afternoon and he said the reflux is definitely the problem right now. If she has other problems he wouldn't be able to tell anyway because of the reflux. He's saying pulmicort, albuterol and chest pt. Resident is saying they're not going to do anything more about any chronic issues while they're treating the pneumonia. She's feeding now and I will just take her home. I can watch her eat much more comfortably there. And we get better tv there too... Frustration has set in. Just want to know why she didn't come with an answer manual?!?!?!? Janay > > > > > > > > I have a daughter with CHARGE who will be 4 this > > > April. It seems > > > that we have been dealing with vomitting all of her > > > life. Different > > > things have helped to make a bit of difference but I > > > think a lot of > > > it is due to her getting older. When she was > > > younger, switching her > > > from powdered formula to liquid (didn't matter what > > > brand or type) > > > made a world of difference. Before switching she > > > would scream and > > > cry the entire time (about 1-2 hours) and then vomit > > > everything back > > > up. I cannot even begin to describe the stress level > > > in our house at > > > that time. After some time and many different foods > > > she ended up on > > > Nutren Junior with Fiber. It has added fiber b\c we > > > noticed that > > > when she would get " backed up " she would gag more. > > > Miralax didn't > > > seem to work for her. For her, reflux medication did > > > nothing to > > > eliminate the gagging and wretching. Although the > > > doctors said that > > > it would still help with any burning from reflux. > > > Now she did get a > > > Nissen at 6 months but at some point it came undone. > > > This past fall > > > she had it fixed. Things are great now in the sense > > > that when she > > > gags she doesn't vomit she just might hawk up some > > > spit and mucous. > > > This has eliminated our stress load greatly b/c > > > before she would > > > lose so much weight with every episode. Now we can > > > keep food in her > > > which is wonderful and we can take her places even > > > though she > > > doesn't feel good b/c I know she won't vomit all > > > over the place. We > > > eventually started hooking her up to the pump at > > > night so that we > > > didn't have to feed her so much with each feeding. > > > This was great > > > b/c we could start getting more in her b/c she > > > basically ate 24 > > > hours a day without being hooked up to the pump > > > during the day. Now > > > after some point, maybe 1-2 years ago her vomiting > > > started spacing > > > out a bit and developed a sort of pattern to it i.e. > > > she would have > > > an episode every month or two. She would feel awful > > > for 5-7 days > > > sleeping all the time, cranky, sensitive to light, > > > etc. We looked > > > into Cyclic Vomitting Syndrome (CVS) and abdominal > > > migraines and she > > > finally got diagnosed last week with CVS. So we > > > finally have a > > > diagnosis which is so exciting b/c now we can work > > > towards treating > > > it. She too had the gurgling sounds. After having > > > her Nissen fixed > > > this past fall and about a month afterwards we think > > > she did develop > > > Dumping Syndrome. But by dropping her feeds during > > > the day in > > > quantity and uping the quantity at night it > > > instantly went away and > > > so now we are trying to inch them back up again. > > > Sorry that this is > > > so long but we have had years of dealing with this. > > > So here is my > > > summary.... > > > > 1. Switch to liquid food vs powdered. > > > > 2. Look into Nutren Junior with Fiber (b/c of the > > > added fiber) to > > > aid with constipation. > > > > 3. Does the vomitting have a pattern to it (i.e. > > > every so many > > > days). Then look into abdominal migraines and > > > cyclic vomitting > > > syndrome (CVS) > > > > 4. Does your child go to sleep almost instantly, > > > have pain, sweat, > > > etc. Then look into dumping syndrome. > > > > 5. With all of the above, considered hooking your > > > child up to a > > > pump at night. It really made a world of difference > > > for us b/c we > > > didn't have to give her so much at each feeding. She > > > actually had a > > > growth spurt from doing this. > > > > Again I apologize for the length. I just signed up > > > to this > > > listserve last night so this is very new to me. Hope > > > this helps. If > > > you have any more questions don't hesitate to ask. > > > And again time > > > makes a big difference as well. > > > > > > > > > > > > > > > > Re: Vomiting issues > > > > > > > > > > > > Thanks everybody! I knew you guys would come > > > through! I am at > > > the > > > > point now where I'm even scared to feed her. To > > > give some > > > background > > > > info I may have left out-she is on Reglan and we > > > just switched > > > to > > > > Prevacid from Zantac (and we got a suspension > > > made of the > > > Prevacid.) > > > > She does have reflux but from the last few upper > > > GI studies it > > > is > > > > minimal and what they saw went back down. > > > Swallow study shows no > > > > aspiration. Even when she vomits she pushes up > > > to get her face > > > away. > > > > She ws vomiting prior to the switch of > > > everything just not as > > > often > > > > and nowhere near as forcefully. The sounds > > > coming from her gut > > > are > > > > like turning a 5 gallon water bottle onto the > > > cooler. > > > > > > > > Believe it or not, I've never vented her tube > > > and the GI has > > > never > > > > asked nor told me to. She is very mucousy but it > > > only starts > > > running > > > > after the first feed of the day. She coughs and > > > sneezes like an > > > old > > > > man all throughout the day. She is not on any > > > heart meds. The > > > > dumping is something I wondered about when I > > > read that post > > > about JD > > > > a few weeks back. Rasha's complication to adding > > > protein is that > > > her > > > > kidney function is declining and I'm afraid to > > > increase her > > > protein > > > > although neprh doc still estimates function at > > > 80%. > > > > > > > > Her OT suggested today the water 30 min prior. > > > I'll try that > > > with > > > > > === message truncated === > > > > > > > > > > > __________________________________________________________ > ______________ > > It's here! Your new message! > > Get new email alerts with the free Yahoo! Toolbar. > > http://tools.search.yahoo.com/toolbar/features/mail/ > > > > > > > > > --------------------------------- > Any questions? Get answers on any topic at Yahoo! Answers. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 It is very frustrating...sometimes I've had better luck getting tests done when Evan was an inpatient than out. One time (it was after they aborted his palate repair because he went into respiratory distress after anesthesia), I actually told them I didn't want Evan coming home until they figured out what was wrong with him (or at least figured out definatively if his Nissen had failed or was intact). He had a g-tube study done 3 days later, and we also had a consult with pulmonology. They decided the Nissen was still intact, and his airway hadn't recoverd from a respiratory infection he'd had 2 weeks later. We got pulmicort and albuterol too. (mom to Evan, 19 months) jkhayes95 wrote: Saw pulmonologist this afternoon and he said the reflux is definitely the problem right now. If she has other problems he wouldn't be able to tell anyway because of the reflux. He's saying pulmicort, albuterol and chest pt. Resident is saying they're not going to do anything more about any chronic issues while they're treating the pneumonia. She's feeding now and I will just take her home. I can watch her eat much more comfortably there. And we get better tv there too... Frustration has set in. Just want to know why she didn't come with an answer manual?!?!?!? Janay > > > > > > > > I have a daughter with CHARGE who will be 4 this > > > April. It seems > > > that we have been dealing with vomitting all of her > > > life. Different > > > things have helped to make a bit of difference but I > > > think a lot of > > > it is due to her getting older. When she was > > > younger, switching her > > > from powdered formula to liquid (didn't matter what > > > brand or type) > > > made a world of difference. Before switching she > > > would scream and > > > cry the entire time (about 1-2 hours) and then vomit > > > everything back > > > up. I cannot even begin to describe the stress level > > > in our house at > > > that time. After some time and many different foods > > > she ended up on > > > Nutren Junior with Fiber. It has added fiber b\c we > > > noticed that > > > when she would get " backed up " she would gag more. > > > Miralax didn't > > > seem to work for her. For her, reflux medication did > > > nothing to > > > eliminate the gagging and wretching. Although the > > > doctors said that > > > it would still help with any burning from reflux. > > > Now she did get a > > > Nissen at 6 months but at some point it came undone. > > > This past fall > > > she had it fixed. Things are great now in the sense > > > that when she > > > gags she doesn't vomit she just might hawk up some > > > spit and mucous. > > > This has eliminated our stress load greatly b/c > > > before she would > > > lose so much weight with every episode. Now we can > > > keep food in her > > > which is wonderful and we can take her places even > > > though she > > > doesn't feel good b/c I know she won't vomit all > > > over the place. We > > > eventually started hooking her up to the pump at > > > night so that we > > > didn't have to feed her so much with each feeding. > > > This was great > > > b/c we could start getting more in her b/c she > > > basically ate 24 > > > hours a day without being hooked up to the pump > > > during the day. Now > > > after some point, maybe 1-2 years ago her vomiting > > > started spacing > > > out a bit and developed a sort of pattern to it i.e. > > > she would have > > > an episode every month or two. She would feel awful > > > for 5-7 days > > > sleeping all the time, cranky, sensitive to light, > > > etc. We looked > > > into Cyclic Vomitting Syndrome (CVS) and abdominal > > > migraines and she > > > finally got diagnosed last week with CVS. So we > > > finally have a > > > diagnosis which is so exciting b/c now we can work > > > towards treating > > > it. She too had the gurgling sounds. After having > > > her Nissen fixed > > > this past fall and about a month afterwards we think > > > she did develop > > > Dumping Syndrome. But by dropping her feeds during > > > the day in > > > quantity and uping the quantity at night it > > > instantly went away and > > > so now we are trying to inch them back up again. > > > Sorry that this is > > > so long but we have had years of dealing with this. > > > So here is my > > > summary.... > > > > 1. Switch to liquid food vs powdered. > > > > 2. Look into Nutren Junior with Fiber (b/c of the > > > added fiber) to > > > aid with constipation. > > > > 3. Does the vomitting have a pattern to it (i.e. > > > every so many > > > days). Then look into abdominal migraines and > > > cyclic vomitting > > > syndrome (CVS) > > > > 4. Does your child go to sleep almost instantly, > > > have pain, sweat, > > > etc. Then look into dumping syndrome. > > > > 5. With all of the above, considered hooking your > > > child up to a > > > pump at night. It really made a world of difference > > > for us b/c we > > > didn't have to give her so much at each feeding. She > > > actually had a > > > growth spurt from doing this. > > > > Again I apologize for the length. I just signed up > > > to this > > > listserve last night so this is very new to me. Hope > > > this helps. If > > > you have any more questions don't hesitate to ask. > > > And again time > > > makes a big difference as well. > > > > > > > > > > > > > > > > Re: Vomiting issues > > > > > > > > > > > > Thanks everybody! I knew you guys would come > > > through! I am at > > > the > > > > point now where I'm even scared to feed her. To > > > give some > > > background > > > > info I may have left out-she is on Reglan and we > > > just switched > > > to > > > > Prevacid from Zantac (and we got a suspension > > > made of the > > > Prevacid.) > > > > She does have reflux but from the last few upper > > > GI studies it > > > is > > > > minimal and what they saw went back down. > > > Swallow study shows no > > > > aspiration. Even when she vomits she pushes up > > > to get her face > > > away. > > > > She ws vomiting prior to the switch of > > > everything just not as > > > often > > > > and nowhere near as forcefully. The sounds > > > coming from her gut > > > are > > > > like turning a 5 gallon water bottle onto the > > > cooler. > > > > > > > > Believe it or not, I've never vented her tube > > > and the GI has > > > never > > > > asked nor told me to. She is very mucousy but it > > > only starts > > > running > > > > after the first feed of the day. She coughs and > > > sneezes like an > > > old > > > > man all throughout the day. She is not on any > > > heart meds. The > > > > dumping is something I wondered about when I > > > read that post > > > about JD > > > > a few weeks back. Rasha's complication to adding > > > protein is that > > > her > > > > kidney function is declining and I'm afraid to > > > increase her > > > protein > > > > although neprh doc still estimates function at > > > 80%. > > > > > > > > Her OT suggested today the water 30 min prior. > > > I'll try that > > > with > > > > > === message truncated === > > > > > > > > > > > __________________________________________________________ > ______________ > > It's here! Your new message! > > Get new email alerts with the free Yahoo! Toolbar. > > http://tools.search.yahoo.com/toolbar/features/mail/ > > > > > > > > > --------------------------------- > Any questions? Get answers on any topic at Yahoo! Answers. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 thik my old paed would of liked me to coem to her with a map of every veing they could use a answer manual and a dicotionary and an enclopedia > > It is very frustrating...sometimes I've had better luck getting tests > done when Evan was an inpatient than out. One time (it was after they > aborted his palate repair because he went into respiratory distress after > anesthesia), I actually told them I didn't want Evan coming home until they > figured out what was wrong with him (or at least figured out definatively if > his Nissen had failed or was intact). He had a g-tube study done 3 days > later, and we also had a consult with pulmonology. They decided the Nissen > was still intact, and his airway hadn't recoverd from a respiratory > infection he'd had 2 weeks later. We got pulmicort and albuterol too. > > (mom to Evan, 19 months) > > jkhayes95 <jkhayes95@... <jkhayes95%40yahoo.com>> wrote: > Saw pulmonologist this afternoon and he said the reflux is definitely > the problem right now. If she has other problems he wouldn't be able > to tell anyway because of the reflux. He's saying pulmicort, > albuterol and chest pt. Resident is saying they're not going to do > anything more about any chronic issues while they're treating the > pneumonia. She's feeding now and I will just take her home. I can > watch her eat much more comfortably there. And we get better tv there > too... > > Frustration has set in. Just want to know why she didn't come with an > answer manual?!?!?!? > > Janay > > > > > > > > > > > > I have a daughter with CHARGE who will be 4 this > > > > April. It seems > > > > that we have been dealing with vomitting all of her > > > > life. Different > > > > things have helped to make a bit of difference but I > > > > think a lot of > > > > it is due to her getting older. When she was > > > > younger, switching her > > > > from powdered formula to liquid (didn't matter what > > > > brand or type) > > > > made a world of difference. Before switching she > > > > would scream and > > > > cry the entire time (about 1-2 hours) and then vomit > > > > everything back > > > > up. I cannot even begin to describe the stress level > > > > in our house at > > > > that time. After some time and many different foods > > > > she ended up on > > > > Nutren Junior with Fiber. It has added fiber b\c we > > > > noticed that > > > > when she would get " backed up " she would gag more. > > > > Miralax didn't > > > > seem to work for her. For her, reflux medication did > > > > nothing to > > > > eliminate the gagging and wretching. Although the > > > > doctors said that > > > > it would still help with any burning from reflux. > > > > Now she did get a > > > > Nissen at 6 months but at some point it came undone. > > > > This past fall > > > > she had it fixed. Things are great now in the sense > > > > that when she > > > > gags she doesn't vomit she just might hawk up some > > > > spit and mucous. > > > > This has eliminated our stress load greatly b/c > > > > before she would > > > > lose so much weight with every episode. Now we can > > > > keep food in her > > > > which is wonderful and we can take her places even > > > > though she > > > > doesn't feel good b/c I know she won't vomit all > > > > over the place. We > > > > eventually started hooking her up to the pump at > > > > night so that we > > > > didn't have to feed her so much with each feeding. > > > > This was great > > > > b/c we could start getting more in her b/c she > > > > basically ate 24 > > > > hours a day without being hooked up to the pump > > > > during the day. Now > > > > after some point, maybe 1-2 years ago her vomiting > > > > started spacing > > > > out a bit and developed a sort of pattern to it i.e. > > > > she would have > > > > an episode every month or two. She would feel awful > > > > for 5-7 days > > > > sleeping all the time, cranky, sensitive to light, > > > > etc. We looked > > > > into Cyclic Vomitting Syndrome (CVS) and abdominal > > > > migraines and she > > > > finally got diagnosed last week with CVS. So we > > > > finally have a > > > > diagnosis which is so exciting b/c now we can work > > > > towards treating > > > > it. She too had the gurgling sounds. After having > > > > her Nissen fixed > > > > this past fall and about a month afterwards we think > > > > she did develop > > > > Dumping Syndrome. But by dropping her feeds during > > > > the day in > > > > quantity and uping the quantity at night it > > > > instantly went away and > > > > so now we are trying to inch them back up again. > > > > Sorry that this is > > > > so long but we have had years of dealing with this. > > > > So here is my > > > > summary.... > > > > > 1. Switch to liquid food vs powdered. > > > > > 2. Look into Nutren Junior with Fiber (b/c of the > > > > added fiber) to > > > > aid with constipation. > > > > > 3. Does the vomitting have a pattern to it (i.e. > > > > every so many > > > > days). Then look into abdominal migraines and > > > > cyclic vomitting > > > > syndrome (CVS) > > > > > 4. Does your child go to sleep almost instantly, > > > > have pain, sweat, > > > > etc. Then look into dumping syndrome. > > > > > 5. With all of the above, considered hooking your > > > > child up to a > > > > pump at night. It really made a world of difference > > > > for us b/c we > > > > didn't have to give her so much at each feeding. She > > > > actually had a > > > > growth spurt from doing this. > > > > > Again I apologize for the length. I just signed up > > > > to this > > > > listserve last night so this is very new to me. Hope > > > > this helps. If > > > > you have any more questions don't hesitate to ask. > > > > And again time > > > > makes a big difference as well. > > > > > > > > > > > > > > > > > > > > Re: Vomiting issues > > > > > > > > > > > > > > > Thanks everybody! I knew you guys would come > > > > through! I am at > > > > the > > > > > point now where I'm even scared to feed her. To > > > > give some > > > > background > > > > > info I may have left out-she is on Reglan and we > > > > just switched > > > > to > > > > > Prevacid from Zantac (and we got a suspension > > > > made of the > > > > Prevacid.) > > > > > She does have reflux but from the last few upper > > > > GI studies it > > > > is > > > > > minimal and what they saw went back down. > > > > Swallow study shows no > > > > > aspiration. Even when she vomits she pushes up > > > > to get her face > > > > away. > > > > > She ws vomiting prior to the switch of > > > > everything just not as > > > > often > > > > > and nowhere near as forcefully. The sounds > > > > coming from her gut > > > > are > > > > > like turning a 5 gallon water bottle onto the > > > > cooler. > > > > > > > > > > Believe it or not, I've never vented her tube > > > > and the GI has > > > > never > > > > > asked nor told me to. She is very mucousy but it > > > > only starts > > > > running > > > > > after the first feed of the day. She coughs and > > > > sneezes like an > > > > old > > > > > man all throughout the day. She is not on any > > > > heart meds. The > > > > > dumping is something I wondered about when I > > > > read that post > > > > about JD > > > > > a few weeks back. Rasha's complication to adding > > > > protein is that > > > > her > > > > > kidney function is declining and I'm afraid to > > > > increase her > > > > protein > > > > > although neprh doc still estimates function at > > > > 80%. > > > > > > > > > > Her OT suggested today the water 30 min prior. > > > > I'll try that > > > > with > > > > > > > === message truncated === > > > > > > > > > > > > > > > > > __________________________________________________________ > > ______________ > > > It's here! Your new message! > > > Get new email alerts with the free Yahoo! Toolbar. > > > http://tools.search.yahoo.com/toolbar/features/mail/ > > > > > > > > > > > > > > > > > --------------------------------- > > Any questions? Get answers on any topic at Yahoo! Answers. Try it > now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Oh, the beloved parenting manual for children with special medical needs. I can't seem to find mine... does anyone have a copy I can borrow? (and never give back!!) Hang in there, Janay and sweet rasha! ina --- jkhayes95 wrote: > Saw pulmonologist this afternoon and he said the > reflux is definitely > the problem right now. If she has other problems he > wouldn't be able > to tell anyway because of the reflux. He's saying > pulmicort, > albuterol and chest pt. Resident is saying they're > not going to do > anything more about any chronic issues while they're > treating the > pneumonia. She's feeding now and I will just take > her home. I can > watch her eat much more comfortably there. And we > get better tv there > too... > > Frustration has set in. Just want to know why she > didn't come with an > answer manual?!?!?!? > > Janay > > > > > > > > > > > > I have a daughter with CHARGE who will be 4 > this > > > > April. It seems > > > > that we have been dealing with vomitting all > of her > > > > life. Different > > > > things have helped to make a bit of difference > but I > === message truncated === ________________________________________________________________________________\ ____ We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. http://tv.yahoo.com/collections/265 Quote Link to comment Share on other sites More sharing options...
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